Mapping Your End-of-Life Choices

Robert H. Laws, a retired judge in San Francisco, and his wife, Beatrice, knew it was important to have health care directives in place to help their doctors and their two sons make wise medical decisions should they ever be unable to speak for themselves. With forms from their lawyer, they completed living wills and assigned each other as health care agents.

They dutifully checked off various boxes about not wanting artificial ventilation, tube feeding and the like. But what they did not know was how limiting and confusing those directions could be.

For example, Judge Laws said in an interview, he’d want to be ventilated temporarily if he had pneumonia and the procedure kept him alive until antibiotics kicked in and he could breathe well enough on his own.

What he would not want is to be on a ventilator indefinitely, or to have his heart restarted if he had a terminal illness or would end up mentally impaired.

Nuances like these, unfortunately, escape the attention of a vast majority of people who have completed advance directives, and may also discourage others from creating directives in the first place.

Enter two doctors and a nurse who are acutely aware of the limitations of most such directives. In 2008, they created a service to help people through the process, no matter what their end-of-life choices may be.

The San Francisco-based service, called Good Medicine Consult & Advocacy, is the brainchild of Dr. Jennifer Brokaw, 46, who was an emergency room physician for 14 years and saw firsthand that the needs and wishes of most patients were not being met by the doctors who cared for them in crisis situations.

“The communication gap was huge,” she said in an interview. “The emergency room doctor has to advocate for patients. I felt I could do that and head things off at the pass by communicating both with patients and physicians.”

Sara C. Stephens, a nurse, and Dr. Lael Conway Duncan, an internist, joined her in the project. Ms. Stephens flew to La Crosse, Wis., to be trained in health care advocacy at Gundersen Lutheran Health System. Through its trainees, tens of thousands of nurses, social workers and chaplains have been taught how to help patients plan for future care decisions.

“People often need help in thinking about these issues and creating a good plan, but most doctors don’t have the time to provide this service,” said Bernard Hammes, who runs the training program at Gundersen Lutheran. “Conversation is very important for an advance care plan to be successful. But it isn’t just a conversation; it’s at least three conversations.”’